Chemotherapy for kids is outdated, toxic and not always effective.
Reality: Over the past 20 years, the FDA has approved ~190 new cancer treatments for adults but only 3 for children.
Why? Because only 4% of the federal budget for cancer research is allocated to childhood cancer research.
In high-risk neuroblastoma, 10% of the kids don't respond to the chemotherapy at all. In these cases, there is nothing more to do.
Lexi's Story: Induction Chemotherapy (6 rounds)
Chemo is the first line of defense against neuroblastoma, and 5-6 rounds of a variety of different chemo drugs is the first part of the treatment protocol. Chemo is designed to kill all cells that are rapidly-growing in the body, including cancer cells, hair follicles and bone marrow. That's why chemo patients lose their hair, including eyebrows and eyelashes. When chemo kills the bone marrow, the bone marrow stops making the blood cells that the body needs for a time and can reduce or wipe out the existence of red and white blood cells and platelets so that the body can't fight infection, clot blood and do the other things blood cells are supposed to do. Chemo is intense; here are a few ways that it impacted our life during those months.
After almost every round of chemo, Lexi's white blood cell count would drop and she would develop a fever. Since she had very little white blood cells (called being "neutropenic"), her body couldn't fight off infection on her own, so we would have to go back into the hospital, get treated with antibiotics and stay in-patient until her white cells would start to come back up. This had us staying in the hospital for almost 2 weeks out of every 3-week chemo cycle.
One of the chemos, Cisplatin, is known to have a potential side-effect of hearing loss. Lexi was supposed to get two rounds of Cisplatin, but since she was already blind, her doctor gave us a choice of whether we wanted to switch to a different chemo for the 2nd round in order to avoid any potential hearing loss. It was a tough choice since we didn't know for sure whether the other chemo would be as effective, but we decided to go with it in order to preserve her hearing. Her doctor and I still believe that this was the right choice and was not related to her future relapse.
One of the other chemos, Doxorubicin, is so toxic that it actually has a lifetime cap on how much a person is able to get. It also has the nickname "red devil." After getting this chemo in both rounds 4 and 6, Lexi developed extremely painful mouth sores, called mucositis. We spent time in the hospital dealing with the mucositis with constant morphine and 24/7 mommy cuddles until her white blood cell count came back up and was able to heal it.
During one of the chemo rounds, Lexi's central line got a little hole in it and became dislodged from the vessel that leads directly to her heart. We had to give the chemo through an IV in her arm (pretty risky) and then she had to have surgery to place a new central line.
We were lucky that Lexi responded well to the chemo; 10% of kids don’t respond to the chemo at all and there is nothing more they can do at that point. After just 4 rounds, most of Lexi's tumors has been cleared! There was one stubborn spot that we added two extra rounds of chemo + antibodies for so that she was all clear of visible tumors by January - 7 months after her diagnosis.
Love Like Lexi Foundation
It is not OK that there is so little federal effort to develop new, safer and more effective cancer treatments for kids. The Love Like Lexi Foundation will donate a portion of funds raised to researchers who we know are making scientific developments and breakthroughs in the lab and just need funding in order to get them into clinical trials for kids. Please read the Research Support page of www.lovelikelexi.org to learn more about the breakthrough research of Lexi's Primary Oncologist Dr. Asgharzadeh.